Tag: Treatment

January 10th, 2018 the paperwork was written up by my neurologist and the request was made, we are headed to DUKE Medical.

A couple of things:

1. This Is Not A Bad Thing:
We are going to get several of our questioned answered. Hopefully qualify to get on their “Active Patient List” which would allow me to be considered for trial treatments and research.

2. I Am In A Better Situation Than Most Myasthenics Headed To DUKE:
I tested positive in blood-work, therefore so much workup was done locally, my time with the specialist will be extremely targeted and very efficient (hopefully) .

3. No, I Do Not Know When I am Going:
Once the paperwork is sent out, it could be a week or months before I get a phone call from them. Especially since I am currently undergoing one of the more major treatments.

4. I Cut My Hair! Due to my current treatment, my hair is starting to drastically thin and fall out. It should not get super patchy, from my understanding, and I will not lose it completely, but I will see a noticeable difference. This week I believe, has been the hardest as it is starting to come out by the handfuls. So I decided to take control and cut off almost 6 inches !!! I actually really like. I am still adjusting.

To say the last three months has been a roller coaster would be an understatement. We began my third treatment option in October; knowing there would a 3- 8 month waiting period to see full benefit.

So here it is, month three and I can honestly say my head is still spinning. Some days I feel like things are going to be “ok” and everything is under control. Then within an hour, I can feel as if the bottom of the world is falling out from under me. As my doctor keeps telling me, this is completely normal.

Due to the way gMG* works, it truly can fluctuate day by day, hour by hour; sometimes by the minute. Making my days, for right now, very unpredictable. To me, this is the hardest part. Why? Because I have commitments. The way in-which I live my life affects a number of people around me. I have commitments at work, coaching, church, family … all the places my heart is, that is where my commitments are.

When I am not be able to be there, calling last minute having to cancel, I feel, lets so many people down. On top of trying to understand and deal with the changes that are being thrown at me, I have this immense feeling of guilt. It brings me down, emotionally. Which also affects my gMG. It literally makes the transmissions in my nervous system run faster and slows down the communication in my muscles. So either way, I feel like I loose.

Last week, I had a terrible episode that made me have to cancel work, coaching and not attend church. Which began with a trip to my doctor’s office. I was slurring my speech, I could barely lift my arm above my head and both eyes were almost completely shut.
After a long conversation with my doctor I was still in the “safe zone” and did not need to go to the hospital, but we were going to reintroduce another medicine that had not worked before. If I continue to get worse, he would be up for a half round of IVIG**. (Thankfully, I do not have to have it right now. Only if my severe episodes become more frequent.)

He believes due to me being on this new treatment, it would allow opportunity for the other medicine, which it did not have prior. It is strictly to help with symptoms in times of extreme episodes when my ice vest or sleep, does not alleviate weakness. This medicine has nothing to do with suppressing the disease. The two will work together. So far, I have seen some benefit and hope it will continue to provide stability.

What have I learned?
1. I have learned to make my goals smaller and to accept those goals.
2. I have learned that I can’t control what is happening to me. That doesn’t mean I have to like it. Allow myself to grieve the situation.
3. I am setting four goals for the month of December.
– I want to loose 10 lbs
– I am going to pick a 5k and train for it.
– I am going to blog/vlog more.
– To be easier on myself.
4. My doctors are amazing and have been beyond supportive of me. (I have always known this, I just have to praise them a little on here. I am very blessed.)
5. I have to come to understanding that episodes are going to happen. They aren’t going away. So how do I handle this going forward?
6. I am not giving up. I have said it before and I will say it again. I hope that someone, somewhere will know my story and be inspired. That it helps just one person. #Live2Inspire1 will always be my motto.

I know what it feels like to be at my lowest. I know that I will have ups and downs. I know that every day has its challenges and struggles. But I also know I made it through the day. I know that I am making plans and trying each day to concur this, despite medical odds. I want to keep working, I want to keep coaching, I want to get back into shape, I want to run and play with my nieces and nephews like I used too. I want to look my doctors in the eyes and say “I did it.”